Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Tuesday, April 2, 2013

Last minute switch.

Hailey's GI nurse had suggested that we find a local infusion company for Hailey's formula. Since Hailey had her feeding tube placed in Utah we were sent home with a Utah based infusion company and they were great! I really liked working with Infusion Innovations. When I ordered formula and supplies it would be here in 2 days. They gave me what ever I needed in any quantity I requested (which they should since I'm paying for it right?) They answered any question I had and I felt like they really cared when I had a problem and needed suggestions. They know about Hailey and know that we are sharing her story online so it was hard for me to have to get a new company. They found one for me called Apria, and we started the switching over process. I was already uneasy about starting over but then things went kind of wonky and I was getting so irritated that this new company didn't seem to have their information together. The first call I got from them they said that they were going to send out a new pump and new IV pole and supplies. When I told them I don't need a new pump or IV pole they said that I was getting one anyway. Then I asked who was going to be paying for this and they said they'd bill insurance and what they don't cover is my responisibilty. I said they don't cover anything and everything is my responsibility and I have these things already and I don't need them again, but they still sent them to me. They also sent me the wrong Joey Bags which hold the formula and the Flush for after a feed. They had the WRONG formula on file and they didn't send me any adapters so I didn't know how they expected me to get the formula in Hailey. So far I wasn't very happy to go from a great company to a new company that was doing every thing wrong.

Then I had Hailey's new dietitian, Courtney, call me and she's not in Las Vegas, but I had lots of questions for her and nothing I say is ever short and sweet. I had this poor girl on the phone for almost 20 minutes. She said that she's here to help and if there was anything I needed she would try to do. Well guess what? I DO have a BIG favor. I need to know how I can go about getting all this formula all the way across the country. She was very helpful. She called the airline for me and arranged for a TSA representative to help us during our check in for our Make a Wish flight. Thanks Courtney!

The representative called me today and assured me things will go as smoothly as possible. She'll have a Southwest Airlines Rep involved as well. We will have to declare Hailey's formula and medication and Hailey will have to endure a pat down, a stomach inspection to verify she indeed has a g-tube, and a wheelchair inspection. I had told her that Hailey doesn't respond well to strangers touching her and to be prepared that touching her can cause her to spasm and that if you're not prepared for that it can be uncomfortable for that unknowing person who doesn't deal with this on a daily basis. I don't want Hailey to cry and be uncomfortable and I also don't want every single person in the airport to be staring at us. The rep asked if we needed a private room and I said that we can see how this is going and if we need a private room one should be available and she agreed to have one ready.

We will see how this goes but so far I think it's going in the right direction. When I told her we were going on a trip for Hailey's Make a Wish she asked what the wish was and I said we are doing a whole Orlando trip. Hailey will be a princess at Disney World and we are also going to feed Dolphins at Sea World and we are getting a magic wand at Universal. She said that she had goosebumps. I said I still get goosebumps. Heck I still get teary eyed when I say she's going to get to be a princess at Disney World. I really need to stop doing that. It's EVERY SINGLE TIME!!

So hopefully we at least have the formula issue for traveling straightened away. I'll see how the formula company itself ends up.